So I just was with a friend doctor and was told the doses recommended for OI was 10mg 3 times a day but I am on 2.5 and still symptomatic.

What dose do you use of midodrine???

TX,7

Click to expand...

I forget the dose I was on except my autonomic doc (and others) say to only take it twice a day as it can be dangerous for it still to be active when you lie down at night. From memory, I was taking 5 mgs twice a day.

I actually take midodrine 4 times a day. I take 5 mg at 3.5 hour intervals (approx., not exact). [edit - so that adds up to 20 mg per day total]. This works for me because while I may rest a lot I during the day I never lie down flat. I rest in a recliner with my feet up. And I never sleep during the day.

On those days when I wake up late, or go to bed early, then I take midodrine three times per day instead of four and space them out more. If there's some other reason that I need to lie down (migraine, flu, etc.) then I skip one or more doses so that I'm not taking it while lying down. And I always make sure my last dose is at least 5 hours before going to bed.

Even while on midodrine (plus florinef, salt tablets, potassium, extra liquids, and a cup of coffee!) my resting (sitting) systolic blood pressure rarely gets up to even 120. It's usually around 100, maybe 105. And my BP is also fine while lying down. Folks who have moderate to high blood pressure, or who have blood pressure swings, might not be able to take this drug. But if your BP is not going too high on your current dose then it seems reasonable to ask your doctor about trying an increased dosage.

Note that some folks on the forum have reported bad side effects but I don't remember who had the problems. My only side effect has been the tingling, pins and needles feeling (mostly on the scalp).

I forget the dose I was on except my autonomic doc (and others) say to only take it twice a day as it can be dangerous for it still to be active when you lie down at night. From memory, I was taking 5 mgs twice a day.

Click to expand...

I agree that midodrine, like most drugs, can be dangerous if not used carefully. Or if the person has a bad reaction to it. So, standard disclaimer -- talk with your doctor, be careful while using it, monitor your blood pressure, etc.

But I do want to share that I felt *much* worse on a twice a day schedule than I did not taking it at all. When I first started taking midodrine I took one in the morning and then a second dose in the late afternoon. I don't remember the exact timing the doctor suggested but I think it was about 7 hours apart. I felt so horrible at about hour 5-6 when the midodrine dose was wearing off. It seemed to wear off right when I needed it most, after lunch, when my body was trying to digest food.

Then I asked the doctor to go to three times a day. That made things a lot better - one in the morning, one at lunch, one in the late afternoon (e.g., 9 AM, 1 PM, and 5 PM). After about a year or so of this (not sure when) I adjusted the dose to 4 times per day, starting at an earlier time in the morning and pushing the doses a bit closer together.

So, just speaking for myself, based on my sleeping/waking/eating patterns (everyone is different!), I would do better with no midodrine at all than to take it twice a day. Trying to be upright while the midodrine was wearing off was miserable. Maybe my body processes it faster than other people? So it wears off faster in me? I don't know. I do know that having that nausea and dizziness every afternoon at the same time was worse than not taking it at all.

Now that my midodrine doses are taken closer together (shorter intervals) it works better for me.

I know that most folks probably would do fine with 3 times per day, not 4. And maybe lots of folks would do fine with twice a day, too. I just thought I'd share my own experience.

Interesting! I dosed it closer together too, just skipped the 3rd dose. So I took one in morning and one about noon or 1 pm. That worked well for me...for 2 weeks! Then I started getting a dangerous reaction and had to stop taking it, sigh!

So I am doing great on 5mg, I went up to 7.5 yesterday but I think I will stick to 5mg. I am wondering if I should lower the salt, if I have to raise BP is it better with midodrine than salt tablets?? I take 4mg of salt now but I am symptomatic, with midodrine I do not get symtptomatic.

So I am doing great on 5mg, I went up to 7.5 yesterday but I think I will stick to 5mg. I am wondering if I should lower the salt, if I have to raise BP is it better with midodrine than salt tablets?? I take 4mg of salt now but I am symptomatic, with midodrine I do not get symtptomatic.

Click to expand...

Is this a comparison between 5 mg taken 3 times a day vs. 7.5 mg taken 3 times a day?

Or does 5 mg mean 2.5 mg taken twice a day? (and 7.5 mg means 2.5 mg taken 3 times a day?)

Sorry for all the questions. As I often say on these forums, I'm easily confused.

PS. I'm not sure about the salt question, but if you can get relief from symptoms without a huge amount of salt then why not? Are you taking any fludrocortisone (Florinef)?

I am trying now 5mg 3 times a day (15mg total in a day). I went down to 2mg of salt but My BP is 130/88 So this might be too much for me. I might try to stop all salt and see how that goes. But is very incredible what I thought it was CFS Vs OI. I have been on my feet all day, I am not symptomatic much so is very interesting what is due to OI vs what is due to CFS. I think most the debilitating symptoms IN MY CASE are OI related.

I am doing great on energy, no PEM or Exercise intolerance, I went walking and felt good instead of a chore. I am surprised about things I thought were CFS are really part of my OI symptoms wise. The bad thing is I am having the side effect of no sleeping at all, so I took the last dose about at 2:30pm see if I can sleep tonight.

I actually take midodrine 4 times a day. I take 5 mg at 3.5 hour intervals (approx., not exact). [edit - so that adds up to 20 mg per day total]. This works for me because while I may rest a lot I during the day I never lie down flat. I rest in a recliner with my feet up. And I never sleep during the day.

On those days when I wake up late, or go to bed early, then I take midodrine three times per day instead of four and space them out more. If there's some other reason that I need to lie down (migraine, flu, etc.) then I skip one or more doses so that I'm not taking it while lying down. And I always make sure my last dose is at least 5 hours before going to bed.

Even while on midodrine (plus florinef, salt tablets, potassium, extra liquids, and a cup of coffee!) my resting (sitting) systolic blood pressure rarely gets up to even 120. It's usually around 100, maybe 105. And my BP is also fine while lying down. Folks who have moderate to high blood pressure, or who have blood pressure swings, might not be able to take this drug. But if your BP is not going too high on your current dose then it seems reasonable to ask your doctor about trying an increased dosage.

Note that some folks on the forum have reported bad side effects but I don't remember who had the problems. My only side effect has been the tingling, pins and needles feeling (mostly on the scalp).

Can you expand on this a little bit more? This sentence sounds so ominous, like I'm doing something dangerous, but I'm not sure what you're trying to say. Is the concern about cortisol levels being too high? Too low?

Can you expand on this a little bit more? This sentence sounds so ominous, like I'm doing something dangerous, but I'm not sure what you're trying to say. Is the concern about cortisol levels being too high? Too low?

Thanks!

Click to expand...

IF your blood pressure is still that low even on Florinef you have low cortisol. I can almost guarantee it. If you have low aldosterone you most likely have low cortisol anyway. Just something I would check out if I were you.

Not since I increased it. I have notice my temperature on hands and feel to be more regulated (just noticed as you mentioned it). I do not take my body temperature but when I go to Dr and it always normal.

Not since I increased it. I have notice my temperature on hands and feel to be more regulated (just noticed as you mentioned it). I do not take my body temperature but when I go to Dr and it always normal.

IF your blood pressure is still that low even on Florinef you have low cortisol. I can almost guarantee it. If you have low aldosterone you most likely have low cortisol anyway. Just something I would check out if I were you.

It did help, it took me out of bed but then I couldn't stay upright for long periods of time. The funny thing is I am consider "mild" dysautonomia!!! I don't want to imagine life where you have it severe!

It did help, it took me out of bed but then I couldn't stay upright for long periods of time. The funny thing is I am consider "mild" dysautonomia!!! I don't want to imagine life where you have it severe!

The midodrine gives me more of a normal life.

Click to expand...

I have a similar story. I was taking just Florinef (fludrocortisone) for years (no midodrine) and it slowly seemed to get less effective. In 2003 I added midodrine and reduced my fludrocortisone dosage. The combination of both drugs (along with prescription, time-released potassium, salt tablets, extra fluids) seems to work much better for me.

@xks201, regarding cortisol testing, I had to think for a while to remember what testing I've had. My memories are a bit vague but here's what I remember.

Some naturopath (I saw several of them during those first 5 years when I had no diagnosis) measured my cortisol a couple of times in the 1990s. These saliva tests collected 4 samples at different times of the day. I believe that both tests that I did showed a shift in the pattern (levels were too low in the morning and didn't rise until later than they should) but that my levels were not actually too low, just slow to start up. I have no idea whether those kind of saliva tests are actually reliable or not.